ADHD Parenting Blog

Archives: September 2009

ADHD Sibling Struggles

One of my biggest ongoing worries is the impact my ADHD child has on non-ADHD child.

As the mother of two--a daughter, Natalie, with ADHD, and a neuro-typical son, Aaron--one of my biggest ongoing worries is the impact Natalie’s ADHD has on Aaron.

Aaron does not like to talk about the subject, except to say, “GROUND HER!” a dozen times a day--when Natalie sneaks into his room on impulse to do a grab-and-run. When she’s in the midst of a fit and she rockets a handful of Legos in his direction. When he’s too embarrassed to have friends over because Natalie’s toys and clothes and discarded craft projects are spread throughout our house thicker than peanut butter on a slice of bread.

I was thrilled to find a touching, beautifully executed new book that will serve as a great conversation starter for talking with our typical kids about their relationships with their special needs siblings. The book is Autism and Me: Sibling Stories, written by Ousie Shapiro, with photographs by Steven Vote, published by Albert Whitman & Company. Autism and Me introduces us to 14 sets of siblings, each featured on a two-page spread. Expressive color photos are paired with the typical siblings’ first-person description of his/her autistic sibling and the relationship they share.

Yes, this book is about autism, not ADHD, but our typical kids will have many “That’s sounds like our family!” moments as they read this book. Ravi has an aide that helps him in school. Ron has trouble with transitions. Jack was disruptive in a restaurant. Each of these moments presents a non-threatening opportunity for our kids to talk about their feelings, and to compare and contrast the experiences described in the book with their own. What’s more, we can teach our typical children a little more about ADHD during an informal conversation about the book.

Just between you and me, I sent a query to Albert Whitman & Company proposing that I author ADHD and Me: Sibling Stories. (I’m always on the lookout for new writing and publishing opportunities.) Is that a book you would buy? Cross your fingers for me as I wait--probably several months--for a reply. In the meantime, share Autism and Me with your children. I’d love to hear, via your comments, where the resulting conversation leads.

School Nurses and ADHD Meds

Our school nurse plays a vital role in making sure Nat’s school experience is the best that it can be.

Natalie’s class is going on a field trip today to visit a one-room school that has been preserved for just such a purpose. She looked so cute this morning, dressed is the closest thing I could find to a Little House on the Prairie dress, and carrying her lunch in a bucket, covered by a dishcloth!

For teachers, I’m sure field trips can be an organizational nightmare. Did anyone forget to bring their lunch? Are the parent chaperones here? Is the bus coming?

With all that’s going on, what are the chances the teacher will remember that one child in the class, Natalie, needs to take ADHD medication while they’re gone? I wouldn’t. And I’ve learned over the years that they often don’t.

So, this morning, I walked Natalie into school, and checked in with both the school nurse, Anna, and Nat’s teacher, Mr. Sibbel. With Anna on the job, I can relax. She’ll be sure Mr. Sibbel takes Nat’s medicine along with him. Now, all he has to do is remember to give it to her when 1:00 rolls around. If he forgets, chances are Nat’s behavior will eventually prompt him!

What would I do without Anna? She plays a vital role in making sure Nat’s school experience is the best that it can be.

I was recently interviewed for a newsletter written for school nurses about how they can be of help to kids with ADHD. You can read the interview below. I plan to print a copy, add a personal note of thanks, and hand it to Anna with a smile. Maybe you’ll decide to do the same for a special school nurse who’s the go-to professional on your child’s school team.

The following article appeared in School Health Professional, Issue 14, Sept. 9, 2009. Download the article here.

Kay Marner, author of “My Picture Perfect Family,” a blog about parenting a child with ADHD, recently took some time to talk with us about her family’s relationship with her daughter’s school nurse. Here’s what she had to say about how their school nurse helps facilitate a successful learning environment for her daughter:

Q. Can you tell me a little bit about your child and what her experience has been like with her school nurse?

A. Natalie is 9 years old, and is a third grader. We adopted her from an orphanage in Russia when she was 2 1/2. She has ADHD, Sensory Processing Disorder and learning disabilities. She’s been treated with medication since she was 5, and we’ve tried a variety of medications and dosages over the years. Right now she takes 40 mg of Ritalin LA when she wakes up, and another 40 mg at 1:00 pm, in the school nurse’s office. She takes a 10 mg dose of short-acting Ritalin at 6:00 pm, then takes Clonidine an hour before bedtime to help with sleep. Natalie just started her fourth year at Sawyer Elementary School in Ames, Iowa. Anna Weber has been the school nurse throughout Natalie’s time there.

Q. What has Natalie’s school nurse done in the past that has made a difference to you and your child?

A. Anna has formed a caring, supportive relationship with Natalie. She’s a calm, stable presence in Natalie’s school environment, and checking in with her has become an important part of Natalie’s daily routine--nearly as important, in Natalie’s mind, at least, as the medication itself! In fact, last year we made a bunch of medication changes, and for a while, Natalie wasn’t taking medication at school. She developed a lot of headaches, earaches and fevers—in her mind! She just wanted to visit Anna! She also got in trouble with her teacher one day. She delivered a note from her teacher to the office, then stayed to talk! Her teacher wasn’t happy that she was gone so long, and kept asking where else she had gone besides the office. She hadn’t gone anywhere—she just missed checking in with Anna and the secretaries— and they missed her!

Q. What are some behaviors (based on stories you have) that school nurses can be on the lookout for related to students with ADHD?

A. For Natalie, it’s her anxiety level, and I think the same is true for many kids with ADHD. When Natalie is anxious, her behavior deteriorates. Naming her feelings, identifying what’s going on in her environment, and giving her some reassurance and safety will go a long way toward calming her down. And, as I mentioned, the hypochondria-- the school nurse becomes part nurse, part detective, part therapist when it comes to kids with ADHD and co- existing conditions. Anna is great about calling me to check in before drawing a conclusion about whether or not Nat is actually sick, or if she’s upset or anxious. We review how she’s been for the past few days, compare what she’s telling each of us, and try to ferret out any precipitating events at school. One day, for example, Natalie came in from the lunchroom crying hard; inconsolable. She told the lunchroom monitor that she had a terrible headache. Turns out a child at her table had taken a poll--raise your hand if you don’t like Natalie--and everyone had raised their hand. Her headache was really heartache. Kids with ADHD often have trouble fitting in socially, so social interactions become a part of the nurse-as-detective puzzle.

Q. What kinds of responses work well for students working with students who have ADHD?

A. Acceptance and support, not criticism and blame. Did the student forget to give mom the note saying she only has enough medication for 3 more days left? Well, sure she did. Organization and focus are part and parcel of her disorder! Help her with tips and praise to become more responsible, don’t react negatively.

Q. Are there specific ways school nurses can reach out to students with ADHD, or their parents, that you have seen work well?

A. Just try to maintain good communication. Have a failsafe system for alerting parents when medication is running out. Check in by phone or e-mail once in awhile to compare notes. Alert the parent if you see changes in the child’s mood or behavior.

Advocating for My ADHD Child

I learned a strategy for preparing for IEP meetings, and found out about several components of an IEP that I’d never heard of.

ADDitude’s Back-to-School IEP Challenge is in full swing! Thanks to everyone who has taken the time to participate so far. I find it so helpful to learn what accommodations are being used by actual kids with ADHD. It helps make all the expert information I’ve read gel.

As I wrote in my post announcing the IEP Challenge, in my quest to become a better advocate for my child with ADHD, I’ve been studying up on anything and everything IEP. Assuming ADDitude aficionados like me know about ADDitude’s ADHD at School ebook, I’d like to share what I learned from another resource, Nolo’s The Complete IEP Guide: How to Advocate for Your Special Ed Child (6th Edition, c 2009, by Lawrence M. Siegal). From the Nolo guide, I learned a strategy for preparing for IEP meetings, and found out about several components of an IEP that I’d never heard of. Here’s a description of each, as I understand them.

Siegal writes about developing an IEP blueprint: your dream plan for your child’s education. As you dream, don’t worry about what’s actually offered in your area, and disregard cost (reality will set in soon enough!). Once you’ve developed this blueprint, use it as a basis for developing the actual IEP (knowing that you probably won’t get everything you ask for). I love this kind of brainstorming exercise, but hadn’t thought about preparing for Natalie’s IEP meetings in this way. Doing so helped me see things differently.

Siegal also writes about including a child profile in the IEP--information about your child that might not be included as you create a plan fill-in-the-blanks style, but that might help teachers understand your child better. I plan to take advantage of this one! When I attended Natalie’s mini-conference (20 minutes in which to tell the teacher everything he needs to know about your child!) a few weeks ago, I came prepared with a list of six things to go over with the teacher, that aren’t in her IEP.

Here’s one example: Natalie may laugh when you try to discipline her. She can’t control this reaction. She’s not purposefully “laughing in your face," being disrespectful--she’s anxious. Try reassuring her as you address the issue. For example, you might say, “I can see you are anxious. You’re okay...you’re safe here with me..or, you’re safe here at school...but we need to talk about..." Please don’t ask her to stop laughing or punish her if she can’t.

Why not write down my list of must-knows and ask that the resulting document be attached to the plan?

Likewise, he suggests a narrative be added to include statements that are helpful, but don’t fit in a goal.

Here’s my made-up example: The IEP team agrees that Natalie’s behavior deteriorates when she is anxious. The classroom teacher will report regularly to the special ed teacher and the parents about signs of such distress. If needed, the team will meet in about three months to discuss the need to add accommodations or pursue an evaluation related to reducing Natalie’s anxiety level. It’s not a goal, but it may lead to one. Having it in writing will serve as a reminder, and help hold those involved accountable for following through.

The other new-to-me IEP component Siegal mentions is a parent addendum. This is a statement made in writing expressing the parents’ disagreement, or partial disagreement, with a decision. It’s added before the parent signs the plan. I can imagine myself writing an addendum something like this: "I agree to the plan that Natalie will have two 40-minute pull-out sessions of special ed instruction each day. While I understand that the number of students the special ed teacher will be responsible for working with during each of these periods may vary, I believe that Natalie requires a student teacher ratio of no more than 3:1 in order to benefit from special ed instruction." This is a way of documenting your efforts to advocate for your child in case legal action is required in the future.

Whew! This stuff is complicated. I hope I related this info accurately...maybe you’d better read the book.

And don’t forget, there’s still time to enter ADDitude’s Back-to-School IEP Challenge for a chance to win ADDitude’s ADHD at School e-book!

ADHD or OCD?

Sometimes Natalie's hyperfocus seems like obsession.

The line between ADHD (Attention Deficit Hyperactivity Disorder) and OCD (Obsessive Compulsive Disorder) is still blurry to me at times. Last weekend, when Natalie visited Aunt Ann’s house for a respite weekend, Ann called me to check in. She showed Natalie how to squeeze the seed pod on an impatiens plant to make the seeds shoot out. Nat was almost scared at first, Ann said, then she tried it herself, and...she was hooked. She spent nearly two hours scouring Ann’s flower beds, pots, and hanging baskets for seed pods.

“It was okay at first, but now it seems a little OCD,” Ann told me. “What do you think she’ll do when she can’t find any more?” Welcome to hyperfocus, I thought. Or, is it OCD?

I reread Dr. Larry Silverman’s article, “Is it ADHD or OCD--or Both?” in order to find out, and I believe that, in this case, it was hyperfocus, not OCD. Natalie certainly was being obsessive, using the word as an adjective, but not Obsessive with a capital O, as in a clinical diagnosis.

Here’s another example of where Nat is lowercase o-obsessive and lowercase c-compulsive, without the uppercase D-Disorder. Natalie is sometimes simply driven in her desire to play with 5-year-old William, who lives down the street. But she wants to play her way; to play teacher or babysitter to his baby. William doesn’t want to be the baby; he wants Natalie to treat him as a peer. Natalie just can’t let go of her desire for William to play her way. She picks him up, steers him when he walks, and yells at him. She inevitably escalates into treating him roughly.

Talking to Natalie about it doesn’t help. I’ve tried taking away the privilege of playing with him for three days. No change. The next time it was a whole week. As soon as she saw William again, she started in with her demands again. Now, well...I don’t know if I can ever let her play with William again. She can’t seem to “stop and think” or “change the channel” no matter what the consequences, and I just can’t allow her to treat him roughly. This really is a compulsion, although probably a lowercase c one.

Parents, does hyperfocus ever seem OCDish in your ADHD child?

Back-to-School for ADHD Kids

Nat, like many kids with ADHD, has a hard time with change.

Three weeks before school started, Natalie started falling apart, behavior-wise, apparently anticipating the thing she dreads most: change. Now, three weeks into third grade, she’s finally starting--just starting--to settle in. Three seems to be her magic number.

Oh, my gosh, it’s been tough. Nat, like many kids with ADHD, has a hard time with change, with transitions. Even change that’s positive, or that’s neutral at worst, wreaks havoc with her emotions. And this particular change, the start of school, is on the surface, no biggie. Nat likes her teacher, Mr. Sibbel, and I’m getting really good vibes from him on my mama radar. Bobby, one of her best school friends, is in her class. She’s in a familiar environment--she’s been at Sawyer elementary since kindergarten. Same principal, same office ladies, same school nurse, same special ed teacher, Mrs. Carter. So what’s the big deal? Change. Any kind of change.

It was like someone flipped a switch, or substituted placebos for Nat’s ADHD medications: Three weeks before school started, she somehow sensed the change to come. Was the smell of sawdust from sharpened pencils wafting through the air? Did she see back-to-school commercials on TV? I’ll never know. But she became triple impulsive, thrice as naughty, three times as needy.

Okay, Miss Natalie Naughtily, you’ve had your three weeks since school started. I want my sweet girl of summer back. Flip that switch, switch out the placebos for the Ritalin. Let’s pack in three months of relative calm before the next big anxiety-provoking triad--the Thanksgiving/Christmas/New Year’s holiday season hell!

Tae Kwon Do as ADHD Therapy

Practicing martial arts is good for kids with ADHD, and Natalie reports that it relaxes her.

Natalie takes Tae Kwon Do classes through our local Parks and Recreation Department. While I, personally, have never seen the appeal of martial arts, I was happy to sign Natalie up when she showed an interest. I’d read (in ADDitude!) that practicing martial arts is good for kids with ADHD.

After watching Natalie in class, I could see why that’s the case. Natalie responds well to the way discipline and respect are built into the class structure. And the movements themselves struck me as a natural form of occupational therapy. Natalie even identified, in therapy (her psychologist is a black belt!) that doing Tae Kwon Do forms relaxes her, helps her regain control when she’s becoming unhinged, and she’s working on using that as a coping skill. I was pleased to observe that the instructor is great with her (Nat doesn’t stay focused for the whole hour) and also with another child in the class who appears to have autism. Nat’s tested once since she started learning Tae Kwon Do, and earned her yellow belt.

The only thing about Tae Kwon Do that’s antithetic to kids with ADHD is the uniform, the dobok. It’s white, for God’s sake. White clothing and ADHD just don’t mix! Am I right, moms?

My niece, Hannah, takes Nat to her lesson every Thursday night. They return home around 8:00, and Nat’s HUNGRY! I insist that she change out of her dobok before eating a single bite. Believe me, that two- or three-minute transition is frenetic! But necessary--otherwise, it wouldn’t just be Nat’s belt that would change colors!

Support for Parents of Kids with Special Needs

After some thought-provoking responses, I'm putting my money where my mouth is.

Back in March, I shared my complex and somewhat inexplicable reaction to the book Handle With Care, by Jodi Picoult. The post, “Special-Needs Novel Hits Close to Home” garnered some pretty intense reactions.

I intended for the focus of that post to be how, as the mother of a child with special needs, the book made me think--how it brought up so many unanswerable questions. And, how deeply it made me feel--how reading it elicited feelings I didn’t understand. The post was not meant to be about abortion, but it was the description of my reaction to protestors outside Planned Parenthood that caught readers’ attention.

I’m not sorry that I wrote this very personal post. I do, however, regret that some readers felt unsupported. Moms of kids with ADHD and other special needs turned to my blog for support and encouragement, and found, instead, what felt like the opposite. For that, I apologize. If this blog doesn’t offer a sense of community, if it doesn’t support and encourage parents, then why should I write it? More to the point, why would anyone read it?

Words are powerful, but actions are more so. I’ve apologized. Now, to quote myself, I’m going to "put my money where my mouth is." By the way, I didn’t mean "money" literally. I meant--how does that saying go?--if you talk the talk, you’d better walk the walk. So, I’m gonna walk. Yes, this time I mean that literally.

As I read Handle with Care, this was that face that I pictured. You see, I know of a child with Ostenogensis Imperfecta, or OI, the bone disease that was the basis of Picoult’s plot. This is Amyra.

She and her mom and big sister were regular customers when I worked on the Ames Public Library’s Bookmobile. Amyra goes to Natalie’s elementary school. For a time they attended the same daycare. Amyra’s mom, Latifah, is organizing “Amyra’s Walk-n-Roll for Better Bones” a fundraising event for the OI Foundation. Yes, I’ll make a small donation--I’ll put my money where my mouth is. But, more importantly, I’ll be there in a show of support to Latifah. I’ll be there to represent how moms of kids with special needs need to stick together. Please, please, PLEASE join me. I invite Ames-area parents to join my team. I beg every other reader to make a pledge--even a tiny one, and designate it as a tribute to moms of kids with special needs.

Whip out that plastic, parents! Here’s the link to my team page. Even $5 will send a message! And the message is this: All moms need to stick together, but moms of kids with special needs need each other especially. I’m sure no one will argue with that.

The Life of an ADHD Sibling

Natalie's ADHD-fueled fits make her brother want to escape the house. This is not what I wanted for my son.

Aaron, my seventh grader, lets himself in the front door after school. “Hi Mom!” he yells.

“Aaron? Will you please bring me the phone?” I shout back, voice ragged with tears. I’m slumped on the floor outside Natalie’s room, one hand gripping the door knob, my back against the door, absorbing the impact of her rage-filled kicks. Bang. Bang. Another ADHD-fueled fit. "Are you calling the police on me?" Natalie asks. "No, I’m calling your dad."

Aaron hands me the phone, silent, the look on his face...what...accusing? Then he retreats to the basement, to his video games, taking the cat with him, and closes the door behind them. He’ll go to Zach’s house as soon as Zach texts him his daily invite: Can you play?

This is not what I wanted for my son. I grew up in a home that warranted escaping--parents who fought, a father with bipolar disorder I adopted friends’ families--ate meals with them, stayed overnight on weekends, vacationed with them. I grew up believing I’d never bring a child into a world like this one. But I did--this one who hides in the basement or in his room. Who spends more time at the Woodbecks' house than with his own family. And I adopted another, to give her a better home than I had. To show her a world worth bringing children into.

It’s 9:00. Natalie got over her fit almost as quickly as it came over her. She went on to have a good evening. I’m tired, have a sick headache from the crying, the tension. Nat’s in her bed, I’m in mine reading. I listen as Don and Aaron watch and talk sports together in the living room a floor below, their nightly ritual. Maybe he’ll be okay, after all, I think. He has this, he has his dad.

In the morning, we get up one at time, till Nat’s the only one still sleeping. Aaron sprints up the stairs, all smiles, to awaken her. He’s so sweet with her. So loving. I listen to his voice as he teases her awake, tells her he loves her.

Maybe he’ll be okay. I hope he’ll be okay. Please let him be okay.

Toys (and Kids) That Can't Slow Down

Natalie’s scooter isn’t defective, it’s just wired differently.

Razor brand electric scooters were all the rage with Natalie and the neighborhood kids this summer. One day a couple of weeks ago four kids gathered in our driveway, and from there, zoomed up and down the sidewalks on matching red ones. Two others tried their best to keep up on the kid-powered variety. It looked as if we were filming a commercial for the Razor company!

Natalie received her scooter as a gift for her ninth birthday, back in June. It was, as I said, ostensibly an exact match to those her friends owned. However, after a couple of weeks Natalie’s scooter developed a “difference."

Natalie would place one foot on the scooter, turn the throttle and push off. So far, so good. She’s zipping down the sidewalk. She reaches full speed. Still no problem. She lets go of the throttle as she nears the end of the block, and...the motor just keeps on running, all out. It doesn’t slow down. It won’t stop.

Yes, Natalie’s scooter has ADHD. (It isn’t defective, it’s just wired differently.) What are the chances?

Razor’s customer service department was wonderful when I called. They’re shipping us a brand new scooter. In fact, it’s probably in transit between California and Iowa as we speak. If only there was a customer service department for kids with ADHD...

No, Natalie’s wiring may be imperfect, even dangerous at times, but I wouldn’t trade her in for anything. She’s irreplaceable. Differences and all, she’s a keeper.